The University of Southampton
University of Southampton Institutional Repository
Warning ePrints Soton is experiencing an issue with some file downloads not being available. We are working hard to fix this. Please bear with us.

A relational analysis of an invisible illness: A meta-ethnography of people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and their support needs

A relational analysis of an invisible illness: A meta-ethnography of people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and their support needs
A relational analysis of an invisible illness: A meta-ethnography of people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and their support needs
Chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) is indicated by prolonged, medically unex-plained fatigue (amongst other symptoms), not alleviated by rest, and causing substantial disability. There are limited treatments on offer, which may not be effective and/or acceptable for all people, and treatment views are polarised. We, thus, aimed to take a step back from this debate, to explore more broadly preferences for formal and informal support among people with CFS/ME. We used a meta-ethnography approach to examine the substantial qualitative literature available. Using the process outlined by Noblit and Hare, and guided by patient involvement throughout, 47 studies were analysed. Our synthesis suggested that to understand people with CFS/ ME (such as their invisibility, loss of self, and fraught clinical encounters), it was useful to shift focus to a ‘relational goods’ framework. Emotions and tensions encountered in CFS/ME care and support only emerge via ‘sui generis’ real life interactions, influenced by how social networks and health consultations unfold, as well as structures like disability support. This relational paradigm reveals the hidden forces at work producing the specific problems of CFS/ME, and offers a ‘no blame’ framework going forward.
Chronic, Chronic fatigue syndrome, Exhaustion, Fatigue, Meta-ethnography: Qualitative, Myalgic encephalomyelitis, Relational goods, Social support, Systematic reviews, Users' experiences, Well-being
0277-9536
1-17
Pilkington, Karen
2abedd15-16bf-45df-a21c-82820fea5743
Little, Paul
1bf2d1f7-200c-47a5-ab16-fe5a8756a777
McDermott, Clare
731edcc4-daf0-432d-98aa-45052beae320
Chew-Graham, Carolyn A.
28f3f383-6b7f-492f-9ffa-8422d7239c9c
Ridge, Damien
be5553ec-dd1c-4561-876f-6b1c11fefc60
Pilkington, Karen
2abedd15-16bf-45df-a21c-82820fea5743
Little, Paul
1bf2d1f7-200c-47a5-ab16-fe5a8756a777
McDermott, Clare
731edcc4-daf0-432d-98aa-45052beae320
Chew-Graham, Carolyn A.
28f3f383-6b7f-492f-9ffa-8422d7239c9c
Ridge, Damien
be5553ec-dd1c-4561-876f-6b1c11fefc60

Pilkington, Karen, Little, Paul, McDermott, Clare, Chew-Graham, Carolyn A. and Ridge, Damien (2020) A relational analysis of an invisible illness: A meta-ethnography of people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and their support needs. Social Science & Medicine, 265, 1-17, [113369]. (doi:10.1016/j.socscimed.2020.113369).

Record type: Article

Abstract

Chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) is indicated by prolonged, medically unex-plained fatigue (amongst other symptoms), not alleviated by rest, and causing substantial disability. There are limited treatments on offer, which may not be effective and/or acceptable for all people, and treatment views are polarised. We, thus, aimed to take a step back from this debate, to explore more broadly preferences for formal and informal support among people with CFS/ME. We used a meta-ethnography approach to examine the substantial qualitative literature available. Using the process outlined by Noblit and Hare, and guided by patient involvement throughout, 47 studies were analysed. Our synthesis suggested that to understand people with CFS/ ME (such as their invisibility, loss of self, and fraught clinical encounters), it was useful to shift focus to a ‘relational goods’ framework. Emotions and tensions encountered in CFS/ME care and support only emerge via ‘sui generis’ real life interactions, influenced by how social networks and health consultations unfold, as well as structures like disability support. This relational paradigm reveals the hidden forces at work producing the specific problems of CFS/ME, and offers a ‘no blame’ framework going forward.

Text
Manuscript CFS_APA anonymised_160820_REVISION1 Clean - Accepted Manuscript
Download (165kB)

More information

Accepted/In Press date: 12 September 2020
e-pub ahead of print date: 16 September 2020
Published date: 1 November 2020
Keywords: Chronic, Chronic fatigue syndrome, Exhaustion, Fatigue, Meta-ethnography: Qualitative, Myalgic encephalomyelitis, Relational goods, Social support, Systematic reviews, Users' experiences, Well-being

Identifiers

Local EPrints ID: 444943
URI: http://eprints.soton.ac.uk/id/eprint/444943
ISSN: 0277-9536
PURE UUID: cfd7e23e-a863-4f42-ab6f-cd93cf165b39
ORCID for Clare McDermott: ORCID iD orcid.org/0000-0001-7389-2116

Catalogue record

Date deposited: 12 Nov 2020 17:33
Last modified: 10 Jan 2022 02:27

Export record

Altmetrics

Contributors

Author: Karen Pilkington
Author: Paul Little
Author: Clare McDermott ORCID iD
Author: Carolyn A. Chew-Graham
Author: Damien Ridge

Download statistics

Downloads from ePrints over the past year. Other digital versions may also be available to download e.g. from the publisher's website.

View more statistics

Atom RSS 1.0 RSS 2.0

Contact ePrints Soton: eprints@soton.ac.uk

ePrints Soton supports OAI 2.0 with a base URL of http://eprints.soton.ac.uk/cgi/oai2

This repository has been built using EPrints software, developed at the University of Southampton, but available to everyone to use.

We use cookies to ensure that we give you the best experience on our website. If you continue without changing your settings, we will assume that you are happy to receive cookies on the University of Southampton website.

×